Lived Experience Of Family Members Research Articles

The Experiences of Family Members of Patients Discharged from Intensive Care Unit: A Systematic Review of Qualitative Studies.

Improving the understanding of the post-discharge experiences of family members after their loved ones leave the Intensive Care Unit (ICU) is essential for developing effective follow-up strategies. These strategies are crucial for mitigating potential negative outcomes for both patients and their families. The aim of this study was to explore the lived experiences of family members after the discharge of their loved ones from the ICU. In September 2023, we conducted a systematic search of qualitative studies across the following databases: CINAHL, MEDLINE, Scopus and Web of Science. The Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) was used to guide this review. Eight articles met the inclusion criteria. Four themes were identified following evidence synthesis: (1) grappling with a weighty burden; (2) recognizing and confronting adversities along the way; (3) seeking support beyond one's own resources; and (4) addressing comprehensive care requirements. Family members face significant psychological and physical challenges while caring for their loved ones recovering from an ICU stay. Adequate formal and informal help is imperative to provide support both during hospitalization and after discharge. A refined understanding of the distinct requirements and experiences of family members can serve as a strategic framework for informing educational interventions and follow-up programs during the transition from hospital settings to community-based care. This study was not registered.

Perspectives of Hospitalized Mental Health Care Users Concerning the Involvement of Family Members in Their Care: A Qualitative Study.

The value of families and professionals in mental health care is well understood. Patient perspectives appear to have gotten less attention to date. This study investigated the perspectives of hospitalized mental health care users on the involvement of family members in their care using a qualitative phenomenological design. The participants with lived experience of family members being involved in their care were chosen using non-probability, purposive sampling. Individual interviews were carried out with the assistance of a voice recorder and observation notes. Because of data saturation, only fifteen people were interviewed. The interviews were transcribed verbatim and analyzed using Colaizzi's method. It started with reading and reviewing the transcript to extract key statements about the phenomenon. The meaning was then determined by carefully studying the primary significant statements and phrases. The established meanings were then organized into themes and subthemes. The three themes that emerged from the data analysis are as follows: a wide variation in patients' perspectives when family members remind them of their medicine, unpredictable visitation by family members, and a lack of support from family members. There were also the following five sub-themes: not visiting mental health care users in the hospital causes uncertainty about their future, mental health care users were concerned by fewer visits from relatives, friends were perceived as a contributory factor to no or limited visitation by family members, disappointment by a lack of financial support, and perceived lack of emotional support from family members. There is a need for family members to visit mental health care users to remove uncertainty about their future. Healthcare providers should listen to mental health care users to identify the challenges they are faced with, and hospital policies tailored to enhancing the involvement of family members should be formulated.

408 “Nothing prepared me for that”: Learning from the lived experiences of family members to inform tailored improvements to CPR training

408 “Nothing prepared me for that”: Learning from the lived experiences of family members to inform tailored improvements to CPR training

Exploring the perceptions and lived experiences of family members living with people diagnosed with COVID-19 in South Africa: a descriptive phenomenological study

ABSTRACT Background The incidence and prevalence of COVID-19 continues to escalate globally, with the consequence to quality of life, the economies of nations and various sectors of society. While there is substantial research on the impact and experiences of the COVID-19 pandemic, little remains known about the perceptions and lived experiences of families living with people diagnosed with COVID-19, particularly within the South African context. Purpose To explore the perceptions and lived experiences of family members living with people diagnosed with COVID-19 in South Africa. Methods A descriptive phenomenological design was used. Data were collected from 15 participants who were family members of people diagnosed with COVID-19 in South Africa. Purposive snowball sampling was used to identify and recruit participants, and data were collected at community level in KwaZulu-Natal, Western Cape and Gauteng, South Africa. Individual in-depth interviews were used to collect the data, and an audio tape was used to record all interviews. Data were transcribed verbatim and analysed using a phenomenological data analysis processes. Ethical approval to conduct the study was obtained from the University of KwaZulu-Natal Research Ethics Committee—reference number: BREC00003228/2021. Results Four super-ordinate themes emerged in relation to the perceptions and lived experiences of family members living with people diagnosed with COVID-19 in South Africa. The superordinate themes were: (1) sources of information about COVID-19, (2) pandemic perceptions and experiences, (3) impact of diagnosis and related burden and (4) aftermath of living with a family member diagnosed with COVID-19. Discussion and conclusion Family members’ perceptions and lived experiences of COVID-19 are largely influenced by media, moreover, the impact of diagnosis has consequences for the physical, mental and emotional well-being of family members. Diagnosis disrupts family dynamics by depleting financial resources due to the caregiver burden experienced. The findings thus imply that provision of psychosocial support is imperative for families living with persons diagnosed with COVID-19.

Doing family online: (In)formal knowledge circulation, information‐seeking practices, and support communities

AbstractObjectiveDrawing on the theory of polymedia and on the role of information and communications technology (ICT) in (re)defining the articulation between the private and the public, this introduction reflects on what ICT does to and for families around the world.BackgroundThrough the development of networking platforms, video call applications, personal sites, and collaborative information platforms, ICT has changed the way people live, love, and interact. It has also afforded new ways to “do family.”MethodBy featuring studies from a variety of national and regional contexts (Canada, Chile, Ghana, Greece, Moldova, South Korea, Ukraine, the Netherlands, United States, and Turkey), it establishes a dialogue between disciplines and a fruitful cross‐fertilization of research topics, methodologies, analyses, and theoretical perspectives.ResultsThis special issue explores (a) the nexus among family life, relationships, and ICT and (b) the relation between the everyday lived experiences of family members and the broader social structures that circumscribe the width and breadth of those experiences.ConclusionThe contributions show the porosity of the boundary between public and private spaces. Alternative forms of expertise and parenting norms are emerging online. ICTs are integrated into parents' information‐seeking and sharing practices, and emotional support. They sustain relationships between family members across distance. However, inequalities regarding access to the Internet and computer literacy still jeopardize digital citizenship and democratization.ImplicationThe contributions in this special issue highlight the need for better structuring of interventions and policies to support families by using up‐to‐date ICT systems and creating mentorship programs and digital mediation for family professionals and beneficiaries.

The lived experience of family members of older people who have died by suicide in rural China.

The aim of the study is to provide insight and facilitate a deeper understanding of family members who have experienced their older family member's suicide. Interpretative phenomenological analysis (IPA) study. Semi-structured individual interviews with five family members of older people who died by suicide recruited from a rural area of Shanxi Province, China. Smith's (2009) six steps of IPA was used for data analysis. Three main themes emerged from the study: (a) Initial psychological reactions; (b) Long-term life effects; (c) Social attitudes. The study shows how the family members of older people who died by suicide have experienced stigmatization and felt largely ignored. A suicide event poses a challenge to the future living quality of the family members. The study also highlights that it is necessary to pay attention to families of older people who died by suicide and providing support is required to improve the quality of life of these family members in rural China. The study adds to the understanding of the lived experience of family members of older people who died by suicide in less economically developed rural areas. Patients and the public were not involved in the design, conduct or reporting of this study. Participants of this study helped with recruitment via snowball sampling.

The lived experiences of family members of a sibling with borderline personality disorder in South Africa: A qualitative study

BackgroundFamily members of family members who have a sibling with borderline personality disorder (BPD) experience a considerable burden. Individuals with BPD pose a challenge to their siblings, as BPD affects the person with the disorder and those around them. PurposeThe aim of this article is thus to report on a study that explored and described the family members’ lived experiences of a sibling with BPD. MethodThis qualitative study used in-depth phenomenological individual interviews, supported by participant observations and field notes for data collection. Data were analysed using Colaizzis' descriptive phenomenological method of data analysis. ResultsSeven participants were interviewed, and three themes emerged from the collected data. The study revealed that participants experienced multiple challenges in understanding, gaining control, and struggling to cope with their own lives. Participants also experienced that interpersonal relationships suffered due to lack of constructive communication and lack of education on the disorder. Lastly, the study revealed that the participants used different mechanisms to cope with having a sibling with BPD. ConclusionThis research illuminated the challenges experienced by family members of a sibling with BPD. These findings provide a basis for recommendations to support the family members who have a sibling with BPD.

Critically Ill Patients: Family Experiences of Interfacility Transfers From Rural to Urban Centers and Impact on Family Relationships.

A critical illness event is intensely stressful for family members and can lead to negative psychological, emotional, social and financial consequences. In geographically rural areas, critically ill patients may require an interfacility transfer to an urban centre for advanced critical care services. In this context, research suggests that these family members from rural areas experience additional burdens, yet little is known about these experiences. An interpretive phenomenological approach was used to explore lived experiences of family members from rural areas whose critically ill relative undergoes an interfacility transfer to an urban centre for advanced critical care services. Participants described feelings of vulnerability in the urban centre, the need to protect the critically ill patient and other relatives, maintaining responsibilities at home, navigating family relationships, and a loss of connection during the transfer window. These findings may better position nurses to address family members' stress and anxiety during this experience.

Exploring the Lived Experience of Families Waiting for Surgical Patients: A Qualitative Study

Family-centered care is an important aspect of perioperative nursing, especially during the perioperative waiting period that separates patients from their families or significant others. However, there is a lack of understanding on what waiting means to family members or significant others. In this hermeneutic phenomenological study, we explored the lived experiences of family members waiting for surgical patients. We identified a shared experience during waiting that we called a "time to focus on self." We identified five supporting themes that shaped this meaning of waiting: the environment, activities, communication, expectations, and feelings. The perioperative waiting experience may be a necessary time of self-reflection and self-care for family members when responsibilities for loved ones are temporarily on hold. Perioperative nurses can provide family-centered interventions to address the physical and emotional needs of individuals who are waiting and improve their experience.

Grief reactions of family members after the death of cancer patients: a phenomenological study

Introduction. The death of a family member due to cancer is one of the most stressful events of life. The purpose of the present study was to investigate lived experiences of family members grieving after the death of their relatives from cancer in Iran. Material and methods. A phenomenological study was performed. The seven-stage process of data analysis was employed. The study was conducted in two hospitals that have oncology wards in Tehran, Iran. We interviewed 14 bereaved family members. Participants went through semi-structured, in-depth, and face-to-face interviews. Results. Study participants’ lived experiences were classified into 2 main themes including ‘grief management’ and ‘evaluating death’. ‘Grief management’ had two subthemes: ‘cultural adaptation to death’ and ‘emotional reactions’. ‘Evaluating death’ also had two subthemes: ‘good death’ and ‘bad death’. One constitutive pattern `families' effort to accept the cancer patient's death' was identified. Conclusions. According to our findings, family members of cancer patients require more supportive programs such as supportive care. Our study indicated the need for culture-based care for the bereaved family members of cancer patients.

The lived experiences of family members who visit their relatives in Covid-19 intensive care unit for the first time: A phenomenological study

BackgroundCOVID-19 patient experiences in the intensive care unit (ICU) are marked by family separation. Families understand the importance of isolation and hospital visiting policies, but they consider it necessary to visit their loved ones and use personal protective equipment. ObjectiveTo describe the lived experiences of family members in their first contact with a relative in a COVID-ICU. MethodsA phenomenological study was conducted using Cohen's method. The subjects were interviewed using an open-question format to allow them full freedom of expression. Twelve family members were recruited between February and March 2021. ResultsAnalysis of the qualitative data resulted in five major themes: (1) fear of contagion related to donning/doffing procedures, (2) positive emotions related to first contact with the hospitalized relative, (3) concern for the emotional state of the hospitalized relative, (4) impact of the COVID-ICU and comparisons between imagination and reality regarding the severity of the disease, and (5) recognition of and gratitude toward healthcare professionals. ConclusionsIt has been confirmed that visits to the ICU reduce anxiety among family members. Our findings constitute an internationally relevant contribution to understanding of the needs of relatives who meet loved ones for the first time while wearing personal protective equipment.

Lived experiences of family members caring for a relative with mental illness

BackgroundMental illness may cause a variety of psychosocial problems, such as decreased quality of life for the affected individual’s family members and an increased social distance for the individual and family members caring for a relative with mental illness. PurposeTo gain an understanding of the lived experiences of family members caring for a relative with mental illness in Giyani, Limpopo province. Design and MethodsA qualitative, exploratory, descriptive and contextual research design was utilised. Data were collected through in-depth individual interviews with eight participants, observations, and field notes. Data were analysed utilising Tesch’s open-coding method, and an independent coder assisted in the analysis process. ResultsThe results revealed that family members caring for a relative with mental illness were alert about safety aspects related to their relative with mental illness. Participants experienced that their relative was not mentally stable, as evidenced by erratic behaviour. They also experienced challenges in caring for a relative with mental illness and engaged coping strategies in caring for a relative with mental illness. ConclusionBased on the findings from this study, it was recommended that support interventions for these families by providing mental health education, strengthening the families’ existing coping strategies, and building their resilience. The implications for practice for psychiatric nurses and stakeholders in social services were highlighted in supporting the families of relatives with mental illness.

The lived experiences of family members of Covid-19 patients admitted to intensive care unit: A phenomenological study

IntroductionThe family members of a patient admitted to a COVID Intensive Care Unit (COVID-ICU) could not communicate with and stay close to their loved one, which resulted in them becoming dependent on hospital staff for remote updates. ObjectiveTo describe the lived experiences of families with a member admitted to a COVID-ICU. MethodsA phenomenological study was conducted. The subjects were interviewed with open-ended questions to allow them full freedom of expression. The researchers involved in the analysis immersed themselves in the data, independently reading and rereading the transcripts to gain a sense of the entire dataset. ResultsFourteen first-degree family members were recruited. Five main themes emerged: fear, detachment, life on standby, family-related loneliness in the COVID-ICU, and an unexpected event. ConclusionsKnowing the experience of families who have a relative in the COVID-ICU is essential for recognizing and reducing the risk of developing symptoms of post-intensive care syndrome.

Family experiences with non-therapeutic research on dying patients in the intensive care unit

Experiences of substitute decision-makers with requests for consent to non-therapeutic research participation during the dying process, including to what degree such requests are perceived as burdensome, have not been well...

The lived experience of family members who care for children with cancer: An interpretative phenomenological approach.

This study aimed to explore the lived experiences of family carers in the care of children with cancer. A phenomenological hermeneutic approach was conducted, informed by the philosophy of Martin Heidegger. Fourteen interviews were conducted with family members: mothers (n=9), grandmothers and fathers (n=5). Fourteen family carers were voluntarily enrolled from a public children's oncology department in Bethlehem in the Occupied Palestinian Territories. Interpretative Phenomenological Analysis (IPA) was used to analyze the data. Three major themes emerged from the data analysis. The first theme was the caring experience, which included three subthemes: changing priorities over time, information given about children's illness, and parents suffering due to treating irritable children. The second theme was the challenges to effective care, which illustrates the most significant challenges faced during caring, including the effects of family relations and emotional support. The final theme was around the support system; family carers found several resources to support them in their children's care, including other parents' experiences with similar diseases, the hospital environment, and their religious beliefs. This study informs parents and healthcare providers about the daily lived experiences of family carers. Healthcare providers can fulfil a significant role in giving emotional support and relief to family carers. However, they will need continuous practise to equip them with the communication skills they require to deal with the family carers in these difficult situations.

A Transformative Impact of Theory in Clinical Practice: A Study in a Cardiogenetics Clinic.

This qualitative phenomenological study explored the lived experiences of family members who have been referred to a cardiogenetics clinic following the loss of a family member to sudden cardiac death (SCD). These family members were evaluated in a Cardiogenetics Clinic in a Children's Hospital in the New York region, which utilizes an interprofessional approach to care. A qualitative phenomenological approach was used to explore the lived experience of family members that were referred following the SCD of a family member. The researcher used hermeneutic dialectics and interviewed family members that attended the Cardiogenetics Clinic. Insights gained through discussion were discussed in the following themes: stories of feelings being heard, stories of meaningfulness, and stories of mutual process. This led to the transformation of the typical linear clinic process to a transformative and dynamic model for integrated delivery of care. This interprofessional model of care offers information regarding SCD, a genetic profile to determine risk for SCD, an integrative collaborative approach to care as well as nursing, medical interventions, psychological support, and counseling for families.

Lived Experiences of Family Members Caring for Individuals Living with Bipolar Disorder

Globally, around a third of the adult population suffers from a mental disorder such as depression, anxiety, schizophrenia and bipolar disorder. Bipolar disorder (BD) is a chronic mental illness which adversely impacts the lives of the affected individuals and their family members. BD has a strong influence on family functioning. The main objective of this study was to explore and describe the lived experiences of family members who care for individuals living with BD. A qualitative research design, which is exploratory, descriptive and contextual in nature, was used in this study. A purposive sample was utilised to select family members who care for individuals living with BD to participate in the study. In-depth phenomenological interviews were conducted to collect data and observations in the form of field notes were documented. The data analysis was done using a thematic analysis. Four themes emerged from the analysis of the transcribed in-depth phenomenological interviews, namely caring for an individual living with BD was exhausting, strenuous and a continuous unasked responsibility; family members experienced their own routines being disrupted by the individual living with BD’s unpredictable behaviour and having to accompany them to appointments; family members experienced family relationships as being strained and challenged; and family members experienced the need for assistance to cope with the individuals living with BD. Strategies to facilitate the lived experiences of family members who care for individuals living with BD should be developed. The suggested strategies are facilitation of exploration of challenges by family members, self-empowerment, empowerment in relationships, and empowerment in mobilising resources.

Experiences of Family Members of Persons With Mental Illness: A Qualitative Inquiry

The shortage of skilled and experienced health workers, lack of facilities, limited psychiatric care and inaccessible mental health care services in the uMsunduzi Municipality in Northern KwaZulu-Natal are causes of concern. With limited access to health services and resources, family members have no choice, but to take care of mentally ill relatives. These underlying problems have warranted the need to explore the experiences of family members living with mentally ill relatives. A qualitative, exploratory, descriptive design was used to collect data by in-depth one-on-one interviews and findings were analyzed using Tesch’s method of data analysis. This study showed that the uMsunduzi Municipality needed assistance with resources to support family members living with their mentally ill relatives and family members’ lack of knowledge and experience emerged as a major factor that influenced the care, treatment and rehabilitation of their mentally ill relatives. Compounded by inadequate mental health facilities and infrastructure as well as  the implications of the non-implementation of the acts, policies, processes and procedures in the uMsunduzi Municipality; this study recommends the need to enhance community education of all health professionals, providing relevant training in mental illness management. A shared decision-making process is vital, so that a collaborative partnership between family members and health professionals across KZN is established. This will in turn enhance the lived experiences of family members and mentally ill patients.

Complexities of Cardiac Genetic Testing

Abstract This study explored the lived experiences of family members who were referred to a cardiogenetics clinic after the loss of a family member to sudden cardiac death. Participants revealed many health concerns and emotions, including disappointment, guilt, ambivalence, blame, and fear of loss. Understanding these findings and their potential effect on the family members may provide nurse practitioners with the ability to improve the quality of care that is offered to family members after sudden cardiac death and further the knowledge for genetic testing and disease management.

Family Members’ Experiences: People with Comorbid Bipolar and Substance Use Disorder

People with comorbid bipolar and substance use disorders are complex, whose families experienced challenges contributing significantly to their burden of care. The aim of the study was to explore these lived experiences of family members caring for relatives, as well as the situations or contexts in which they experience these. A qualitative phenomenological research approach with explorative, descriptive research designs was adopted. In-depth phenomenological interviews were done with six purposive selected participants. Phenomenological data analyses focusing on the textural (lived experience) and structural (the context in which it was experienced) were followed after data collection. The lived experiences of participants included feelings of helplessness and emotional and physical exhaustion, as well as the causes of these feelings. The situations contributing to these feelings included non-compliance with prescribed medicine for bipolar disorder combined with drug abuse as well as a threat to the safety of the patient and others, stigmatisation, embarrassment and shame.